Last week, Emma and I were given an opportunity to go to Princeton, NJ to participate in a focus group hosted by a diabetes pharmaceutical company. The company had reached out to Children with Diabetes and they reached out to me, as I am a somewhat active poster on their forums.
After asking them several times if they were SURE they wanted Emma, reminding them that she is 5 - and has the attention span of a 5 year old - we happily accepted. I was pretty excited about the opportunity.
It was a bit of a struggle with the planning because they were feeding us, and I had to make sure we had Gluten-Free options. Although the planning was a bit of a pain, it was all good in the end. We walked into a lovely local restaurant and they handed me a gluten-free kids menu (score!) And, the restaurant made her gluten-free waffles and they had gluten-free options on their buffet for breakfast and lunch.
The goal of the focus group was to identify what parents need when they are first diagnosed. Something that this company could offer to families to take home with them as they leave the hospital. They invited a great cross-section of patients and parents - with Emma being the youngest at 5 and the oldest being 17. The kids were also diagnosed at different ages, which helped to get different perspectives on what parents need. I think probably the only "control group" that wasn't included was probably the "less connected". The sheer nature of where this group came from meant that we are all pretty connected - we sought out and found CWD at some point after our children were diagnosed. I know there are lots of families out there that aren't connected with other families with diabetes and we were probably missing someting of their perspective.
Emma made friends quickly and was definitely a hit in the group. She was also complimented on her manners, which I was especially proud of!
There were lots of different ideas of what people felt would be most beneficial when coming home with a diagnosis of Type 1, although most people felt that someone they could reach out to when they want home was pretty high on their list of things that would be helpful. Someone to help them see through the fog of diagnosis. That's what Children with Diabetes does for so many!
It was a long day, plagued by high blood sugars, sickness from what I can only guess was ketones, a pump malfunction and having to give injections, getting 20 miles down the road only to have to turn around to go back and get my laptop that I forgot. But, it was a great day.
For me, personally, I was thrilled to meet Kerri Sparling, of the Six Until Me blog. I don't remember how I found this blog, but I read it regularly and I refer every mother of a teenage girl with diabetes to this blog. This is a great place to see that there is hope for a child with diabetes growing into an adult with diabetes, getting married, and having a family. And her baby is pretty cute too!
We also met a former Pittsburgh Steeler - Randall Simmons - who was diagnosed with Type 1 diabetes early in his professional career. He talked about how he managed his diabetes in an extremely physical situation and dealing with the emotional side of factoring Type 1 diabetes into your everyday life. Emma has a football signed by him to show for it.
The company indicated that this is only the first time we will meet together - I look forward to any opportunity to get together with this group of families again. We all relished the opportunity to give back to new families what we have learned, coming out of the fog on the other side of diagnosis!
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